Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

New To All Of This

LyndaK

Recommended Posts

LyndaK Rookie
LyndaK
Posted

:( Ugh. This all seems overwhelming right now for me. I have been told that I have allergies to wheat and rice (but not oat). I have had the celiac sprue blood test last week but don't know yet but am also going in for a colonoscopy this Thursday.

If I test negative, can I have oat?

What are my best bets for gluten-free and rice free?

Thanks a bunch!!!!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Rikki Tikki Explorer
Rikki Tikki
Posted

Welcome Lynda:

For me gluten free also means oat free as I have gotten quite sick eating oats. If your test comes back positive I would stay away from the oats. I am not sure on the rice. It can be very overwhelming, just take it slow and be sure to read labes carefully. If you do not have celiac and are allergic to rice and wheat those are fairly easy to watch for on the labels.

Anyway, just wanted to say welcome.......

LyndaK Rookie
LyndaK
Posted
  • Author

This is all new to me. I have just been told that I have allergies to wheat and rice (but not oat). I have had the celiac sprue blood test... don't know yet. But I am also going in for a colonoscopy this Thursday.

If my test comes back negative, can I have oat?

What are my best bets for gluten-free and rice free?

Thanks a bunch!!!!!

GreySaber Apprentice
GreySaber
Posted

There's better people here then me to answer your questions, but I'll toss out a few things until they show up to tide you over. ;)

With oats, we don't really know if oats would be alright, the trouble is that oats are almost always testing positive for gluten, but that's due to cross contamination with other things. They might be ok if you could get safe organic oats, but even if you could, we wouldn't be sure.

flagbabyds Collaborator
flagbabyds
Posted

Oats make me violently ill, no matter what, even if they say they are gluten-free.

JUst read labels, I have no idea about rice I basically live on it...

sorry

Ursa Major Collaborator
Ursa Major
Posted

Why are you having a colonoscopy? It is not a useful tool for diagnosing celiac disease, you would need an endoscopy for that, with biopsies taken from about six sites.

Also, gluten free doesn't just mean wheat free, but you'd have to stop eating rye and barley as well, and yes, oats, and everything that is made with those grains.

ladyx Newbie
ladyx
Posted
:( Ugh. This all seems overwhelming right now for me. I have been told that I have allergies to wheat and rice (but not oat). I have had the celiac sprue blood test last week but don't know yet but am also going in for a colonoscopy this Thursday.

If I test negative, can I have oat?

What are my best bets for gluten-free and rice free?

Thanks a bunch!!!!

colonoscopy is for crons or colon polops in your lower gi tract... biopsys should be take from your upper gi through your stomach... I too think oats are bad...when I read that some oats were ok I was excited. I gave my son who is supper sensetive to gluten, some gluten-free oat cookies that stated no cross contamination...he threw up for two days...couldn't even keep water down.....even when nothing was in his stomach he threw up his own gastric juices...my mom who is a nurse asked what in the world I was thinking...that oats is one of the highest sources of gluten you can find so I am not sure I believe all this hipe about oats beeing ok. As far as flours go there are a couple dozen kinds of flours you can try that are wheat and rice free...potato, tapioca, millet, buckwheat, arrowroot, dare I say soy around here, garbonzo bean, corn ect.

Well, good luck with all your tests and if they all come back negitive you might want to get a second opinion from a doctor who actually knows which in to stick the scope in in order to do your tests lol.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Guest schmenge
Guest schmenge
Posted
This is all new to me. I have just been told that I have allergies to wheat and rice (but not oat). I have had the celiac sprue blood test... don't know yet. But I am also going in for a colonoscopy this Thursday.

If my test comes back negative, can I have oat?

What are my best bets for gluten-free and rice free?

Thanks a bunch!!!!!

I'm not sure I have any exact answers, but at least my response will push this post back to the top of the list. :)

From what I have read you can have a wheat allergy, be gluten intolerent or have Celiac. These are three seperate things. A blood test can not conclusively tell you that you do not have Celiac. I don't think the colonocopy will tell you this either, that would take an upper GI.

Oats are typically cross contaminated by wheat (the oats themselves are not bad) and hence most people avoid them. You can find oats that are processed in plants that do not process wheats. If it turns out that you do not have Celiac, only the wheat/rice allergy you will not need to avoid foods with gluten, only the foods with wheat and rice. You'll still need to to a lot of label reading!

darlindeb25 Collaborator
darlindeb25
Posted

Lynda, you must also realize that even doctors mis-speak. Some call gluten intolerance a wheat allergy and it's not the same thing. An intolerance is nothing like an allergy. The reactions are completely different. I saw a new doctor at the office I go to and was telling him I have celiacs and he says to me, "So does my son, he can't have barley, it makes him so ill." I knew at that moment that this doctor had no idea what he was talking about. His son may have a reaction to barley that is different then wheat and rye, but he still can't have any of them. I didn't use to react to barley, but I still couldn't have it. Unfortunately, we can't trust the medical community to truly understand gluten intolerance or celiacs as of yet. The best info you will get will be in these forums from the people who actually have this disease, the ones who deal with it on a daily basis, not the doctors or even many dieticians, they don't always understand either. Celiacs and gluten intolerance is a very sneaky disease--try going gluten free and see how you feel. Deb

LyndaK Rookie
LyndaK
Posted
  • Author

Thanks for all your input. I called my doctor today and asked if a colonoscopy was the correct thing to do or an endoscopy (I told her the patient of hers even recommended it- along with this site). But she still wanted it done. And of course, I forgot to ask why- I was at work at the time.

I'll let you all know what the results are. Thanks!!!!

JKJ Newbie
JKJ
Posted

Hi -- I also have been sent for a colonoscopy to rule out Celiacs . (that's what the order said)

Then the specialist had me have a "celiac Screening" blood test . What tests that amounted to I don't know - it simply said on the order "Celiac Screening" -

I am beginning to suspect that it was just a good reason for my Family Dr. to get me in for a colonoscopy which she has been trying to do. It is being done after just 8 weeks back on Gluten . The specialist claims he will be able to see if I have celiac damage in that time ??? the blood testing came back negative after being on wheat/gluten for just 4 weeks.

Now I'm thinking I don't like my GI dr any better than I have been liking my family Dr. :)

How come He is the only one who thinks he can diagnose Celiac with a colonoscopy??

Also - I have not had the terrible repercussions that I had for 7 weeks last summer (D!) since being on wheat again . I wonder - does that mean I don't have Celiac D.?

Oh such a complex thing this is - for sure!

JKJ

ladyx Newbie
ladyx
Posted
Thanks for all your input. I called my doctor today and asked if a colonoscopy was the correct thing to do or an endoscopy (I told her the patient of hers even recommended it- along with this site). But she still wanted it done. And of course, I forgot to ask why- I was at work at the time.

I'll let you all know what the results are. Thanks!!!!

I had a colonoscopy before I was diagnosed for celiac because they thought I had crons. My Gi told me that everything was fine and that I only had IBS...if celiac could be diagnosed that way I think she could find it...since she is in the same group as my sons pediatic GI who is the leading celiac GI in my area. When I asked him if I needed an endoscopy since I just had a colonoscopy he said yes and that you can't tell if you have celiac from a colonoscopy and I beleive him becasue around here they call him the celiac doctor...when we went to the lab at the children's hospital to get our family blood drawen after Leo was diagnosed they practically rolled there eyes and said oh, Dr. Devoid sent you didn't he. I think you should really find a doctor who knows which test to give you...and good luck!

LyndaK Rookie
LyndaK
Posted
  • Author

So today was the day. I went in for my colonoscopy and while I was there I convinced the doctor to do an endoscopy on me too considering that there was a chance my blood test could come back with a false reading. He agreed with my logic and did it!!! Plus I figured I didn't want to go through all the prep again and pay for the "rent of the room" expenses again.

My blood test came back negative. The doctor could not see anything obviously wrong during the endo. or the colonoscopy. But he took stuff from both ends to get bio-oped to rule out celiac or colitis. Those results will take 3 weeks. Until then, my doctor said to continue on my gluten-free diet or at least wheat free.

Thanks for all your help, encouragement and prayers. No matter the outcome, I will for sure use this site to help me with my new diet.

Lynda

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,553
    • Most Online (within 30 mins)
      7,748
    Jennifer CCC
    Newest Member
    Jennifer CCC
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.